Quality of life research in head and neck cancer: A review of the current state of the science
Introduction
Head and neck cancer (HNC) patients are unique with regards to the potential adverse impact of tumor and its treatment on quality of life (QOL). HNC refers to primary tumors arising out of the larynx, pharynx, oral cavity, paranasal sinuses and the salivary glands. Thus, they arise in areas which are structurally complex and functionally imperative for critical activities such as speech and swallowing. Furthermore, head and neck deformities that result in loss of facial integrity may have profound emotional and social effects. Thus, evaluation of the biopsychosocial sequellae of HNC and its treatment is of great importance [1]. By understanding these effects, we can potentially design interventions that lessen the adverse impact of this disease process.
Concerns about the acute and late effects of combined modality treatment have provided impetus for the recent flurry of studies evaluating QOL and symptom outcomes in patients treated for advanced head and neck cancer [2], [3]. Despite this, the failure to use a consistent definition of QOL and inconsistent use of measures to assess outcomes in HNC patients has led to numerous problems. These include: (1) a lack of consensus of the importance of QOL in managing HNC patients, (2) a debate on how to best assess QOL in HNC patients, and (3) a lack of understanding of how to interpret data [4]. Thus, it is important for clinicians to understand the meaning of QOL, how it is measured, and how it can be used. In the following review, we will begin by defining quality of life and distinguishing it from symptom control outcomes. We will then discuss the psychometric measures and available tools to assess both QOL and symptom control in the head and neck population. We will summarize what we have learned from current studies. Finally, we will use the research to provide recommendations for clinical practice.
Section snippets
Defining QOL and symptom control
QOL is a global construct that has developed over the past three decades in response to the perceived need to assess the patient's overall sense of well-being and how it relates to disease and disease treatment [5], [6], [7]. QOL is affected by intrinsic characteristics of each individual patient including: beliefs, expectations and experiences [6]. Thus, QOL must be evaluated from the patient's perspective. This view has been supported by the World Health Organization which defines QOL as “an
Significance of QOL in HNC
QOL data can provide information that guides health care related decision making on several levels [12]. First, it can help shape public policy and health care decisions made by governmental and private institutions. It can also guide the research agenda of pharmaceutical companies and cooperative groups. Most importantly, QOL measurement can provide information to guide clinical decision making [13]. QOL studies should inform the practitioner about the impact of specific treatments on
Limitations of QOL research in HNC
From a health care provider's perspective, the global definition of QOL leaves much to be desired. First, QOL research has, at times, failed to provide health care professionals with clinically relevant and interpretable information that can guide treatment decisions. This has led researchers to attempt to make commonly used research tools more accessible to the practicing clinician [14]. One way of doing this is to take an individual tool and define the changes in score that are clinically
Head and neck HRQOL instruments
HRQOL measurement tools should be easy to administer, easy to understand and easy to score. They should have been tested and found to be valid (measure what they say they measure), reliable (produces the same results in the same patient group when repeated), and sensitive (responsive to change in patient's condition). Most importantly, they should be clinically relevant. In other words, they should provide information that will help the physician in management of the patient's condition. Such
It is important to know how to define a clinically significant outcome
Defining a clinically significant improvement in outcome is easier when the outcome measure is survival. It is intuitively obvious that an increase in 3-year survival of 15% is clinically significant. However, the subjective nature of HRQOL and the various response formats and scaling methods used for self-report tools makes it difficult for the clinician to interpret scores. Unfortunately, limited work in HNC has been reported in which investigators have systematically attempted to define
Conclusion
As we continue to investigate new treatment regimens in the hopes of improving the survival of patients with head and neck cancer, it is important that we simultaneously continue to assess the biospychosocial ramifications of therapy. Well conducted, hypothesis driven studies using validated tools provide critical information to guide patients and health care providers in clinical treatment decisions. This implies understanding the difference between general QOL and symptom assessment as well
Barbara A. Murphy, associate professor in the Division of Hematology/Oncology, serves as the leader of the Head and Neck Research Team and the director of the Pain and Symptom Management Program (PSMP) at the Vanderbilt Ingram Cancer Center. The dual role allows her to pursue her personal area of research interest: the early and late sequella of treatment for head and neck cancer patients. The PSMP Research Team is a multi-disciplinary group of investigators representing the School of Nursing,
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Barbara A. Murphy, associate professor in the Division of Hematology/Oncology, serves as the leader of the Head and Neck Research Team and the director of the Pain and Symptom Management Program (PSMP) at the Vanderbilt Ingram Cancer Center. The dual role allows her to pursue her personal area of research interest: the early and late sequella of treatment for head and neck cancer patients. The PSMP Research Team is a multi-disciplinary group of investigators representing the School of Nursing, Peabody College, the Divinity School, Alive Hospice, and Meharry Medical College. She is collaborating with members of the PSMP Research Team to assess the following issues in head and neck cancer patients: (1) swallowing, nutritional and metabolic changes in head and neck cancer patients undergoing chemoradiation, (2) neuroncognitive changes associated with treatment, (3) social phobia and avoidance, and (4) interventions strategies for limiting the late effects of therapy. Her second area of interest is systems approaches to improving pain control. She is Co-PI on an R-01 evaluating the efficacy of an opioid titration order sheet for improving pain in outpatients with cancer. She is the PI of an R-21 which extends this area of research to the hospice setting.